Q18. How do I contact other people with Kallmann syndrome ?

Kallmann syndrome and other forms of congenital hypogonadotropic hypogonadism are rare conditions. Patients often have difficulty in being able to talk or meet with fellow patients.

It is not unusual for a patient to be treated by a doctor who has not come across the condition before and knows no other patients with the condition.

Some patients find it helpful to be able to talk to fellow patients to be able to talk about aspects of having the condition which are difficult to explain to other people. Some patients find it reassuring just to know that they are not alone with the condition and that they are not the only person in the world not going through puberty.

Patient groups for rare disorders:

The Rare Connect Organisation is a European organisation that links together patient groups for rare conditions and allows patients to contact each other and access information.

The Rare Disease UK group is a UK based organisation for patients with rare disorders and provides information and patient support.

Facebook Groups:

There are three main groups on Facebook for patients and families who want to learn about Kallmann syndrome & Congenital Hypogonadotropic Hypogonadism and to talk to other patients.

Each of the three groups has a different privacy setting so you can control how much information is displayed on your time line visible to other people. ----------------------------------------------------------------------------------------------------The OPEN group is called "Kallmann syndrome Links and Help"https://www.facebook.com/groups/77192005117

As the name suggests the group is totally open. Anybody can search for the group and all posts inside the group will be visible to everybody else and other people can see you are a member of the group.----------------------------------------------------------------------------------------------------The CLOSED group is called "Kallmann's Syndromers"https://www.facebook.com/groups/114162694465

Anybody can search for this group and see who is a member of this group. However all the posts within the group are private and can only be seen by fellow group members. The posts will appear on your time line but will not be visible to anybody else.----------------------------------------------------------------------------------------------------There is also a SECRET group.

This group can not be searched for. Nobody outside the group can see who is a member or any of the posts posted. Nobody outside the group will even known the group exists.----------------------------------------------------------------------------------------------------

If anybody wishes to join the secret group as well they can ask an existing member of the group to let them in or leave a message on this site.

There is nothing special about the posts in the "secret" group, it is just there so all the posts are hidden from other people's timelines if you do not want anybody else to know about your KS / CHH.